Duchenne Awareness Day

On Sept. 7th families all across the world are observing Duchenne Awareness day. But if you were to ask any of us, we’d tell you it’s not just awareness we’re after; what we want is a cure.

If you’ve never heard of Duchenne, also known as DMD, you’re not alone.

Duchenne is a rare and fatal genetic disorder that affects 1 in 5000 boys. One of those boys is our youngest son, Danny Boy. You can learn more about DMD by visiting the Parent Project.

Every boy with Duchenne is unique and progresses differently. For Danny Boy, he’s progressed quickly. I could list the surgeries, the many doctor appts, treatments, and machines he depends upon, but the bottom line is that he needs a cure.

Danny and all the other boys with DMD need a cure.

Danny and all the other boys don’t need more treatment; they need a cure.

We aren’t trying to be ungrateful.

We’re thankful for the treatments and the advancements in care.

We’re grateful for the resources invested, and the time you’ve spent so far.

We just ask, please don’t give up. Keep going, because we need a cure!

This disease isn’t waiting for anyone to figure out the costs. It’s not discriminating on the next boy who’s lost.

The progression of this disease is happening right before our eyes.

As parents, advocating for our sons, we plead with you to hurry because we can’t fathom the thought of our sons losing this fight.

With a heart of gratitude

To the countless people in the trenches fighting for a cure, from the researchers, physicians, therapists, advocates, and many others, thank you.

I know you must get tired, frustrated, exhausted, and even mad.

I understand.

Please keep fighting, and know you’re not fighting alone.

I may not be on the steps of the Capital advocating by your side. I may not be in the lab working on the latest gene therapy with you, but believe me, when I say, I’m fighting right alongside you!